“I want to change the misconceptions about rheumatoid arthritis.”18 November 2021
Sarah, 38, first noticed symptoms when she was 17 and these became more noticeable in her third year of her textile design degree. Since being diagnosed with rheumatoid arthritis, she’s been on a rollercoaster journey. Here’s her story.
“When I was at uni my feet and fingers became swollen.”
I was a normal student and going partying. I noticed the swelling would feel worse after alcohol. When my hands were swollen, I struggled to grip a pen and bend my fingers.
I saw a GP who told me to take ibuprofen and it would go away, but it didn’t. By my third year at university, I was really bad, and I went to see my own doctor. She sent me to have blood tests and told me she thought it was rheumatoid arthritis.
“I thought I was going to fail my degree; it was a hard time.”
I was put on hydroxychloroquine and sulfasalazine, and it didn’t do anything. I was put on steroid injections and methotrexate tablets. The treatment was aggressive in the beginning, and I lost a lot of weight. As I was doing an art-based degree all of the focus was on my final year, it was very stressful.
I felt so sick and I lost my appetite. I then went onto methotrexate injections and rituximab infusions, and I didn’t respond to that. I was then prescribed tocilizumab. Tocilizumab became ineffective, so now I've on a new journey with anti tnf therapy. I am taking a drug called certolizumab pegol.
Being on so much medication in your 20s is hard, as everyone is going out, and I wanted to be part of that.
Also, the cocktail of medications and infusions has had side effects. These have included anaemia, rashes, sickness, fatigue, kidney problems, nausea, headaches, weight loss, changes with skin, hair and nails.
I went travelling after uni and when I returned, I had persistent stomach pain problems and I went to hospital for scans.
I found out I had advanced endometriosis and I had to have a six and half hour operation. It was a horrible time.
“I thought my arthritis would go away.”
When I went to hospital everyone was older and people stared as if they’d never met anyone my age with arthritis.
I felt that I had failed, as I was still in Cornwall and my friends were moving away and getting jobs. I was really struggling with the reality of the diagnosis.
I’d done my degree and all of sudden everything was being taken away from me.
My mum kept me going as she’s a nurse and understands health conditions. I remember that she burst into tears when we at the rheumatology unit, she probably knew what the diagnosis meant for my future.
I had to give up my career as a spa therapist too, as my joints got too sore doing massage.
My boyfriend has been an amazing support. When I first met him, I was embarrassed, and I didn’t tell him about my arthritis at first.
“I got COVID after shielding and going back to work.”
When I got COVID, I didn’t know what to do about starting my anti-tnf again, as I was self-isolating. No-one seemed to be able to help and I ended up getting advice from a pharmacist.
Since going on a new medication, I have started to have panic attacks and bad anxiety. To be honest, I started feeling I was going a little mad during lockdown and shielding has lot to answer for.
I don’t think there’s enough awareness of how arthritis impacts on your everyday life.
When I went on anti-tnf there were times when I couldn’t put my shoes on, my wrists were too weak to lift a kettle and I couldn’t chop vegetables. My hands were so sore, it was tricky to grip and pinch to open packets and do things like open car doors.
“I’ve been sea swimming for a year, and it helps my head.”
I started swimming with my mum and a friend, and it gives me a buzz, it helps me feel clearer. Swimming is definitely good for my mental health.
My art really helped when I was shielding. I get my inspiration from nature and Cornish wildflowers. I’ve sold a few of my prints and I would love to sell more of my art in the future.
I realise now that having an arthritis diagnosis when you are young is a lot to deal with. I felt cut off and I didn’t know anyone else who was my age who had arthritis. It’s hitting me more now as I’m thinking about the future and if I can have children.
Going online and finding Versus Arthritis on Instagram made me feel better, as there were people similar to me, I felt not so alone.
I wouldn’t have contacted Versus Arthritis when I was younger but now, I don’t want a younger person to feel alone. I hope that something positive will come from sharing my story with others.
“I have learnt what helps my mental health.”
It's important to recognise the challenges and to learn what helps you to look after yourself. These are the things I’ve learnt.
- Have friends around you who are empathetic, listen, understand, and love you no matter what you are going through. Just being there is so important!
- It can be frustrating trying to get people to understand the full-on immunosuppressant therapy you have to go through.
- How lucky I am and grateful for always having support from my mum and my amazing friends and family. Thank you!
We’re here whenever you need us.
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